Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Patti Hi Patti, I was looking over the files and just really checking things out. I was wondering if there is a place in it that we all can list certain things? Nothing long and detailed but maybe a breif description of our children. Like which kind of seizures our children have, what meds they've been on, what meds they've been weaned off of, age, illness, date of illness, and maybe if they are ready to leave the group they could state the reason why,(their child recovered completely, diet not seemingly working, such.) Make it very short, maybe one page-but I think it is important to have. If you have this already let me know how to access it. Thanks In ketogenic , " Patti " <durovchic@a...> wrote: > Hi Beth, > > Our clinic (in Portland, Oregon) is considered to be one of the better ones. We have a very supportive neuro who is an enthusiastic proponent of the diet, and a very experienced and absolutely brilliant dietician. They have treated over 175 Keto patients with a great success rate. They start almost all of their kiddos at a 3.5:1 ratio, and only go higher if it's really necessary. They also do not do fasting. They had us cut out all sugar and white flour and increase fats (adding extra butter, mayo, substituting cream for milk, etc.) for a couple of weeks prior to initiating. They've found this method to be just as effective as fasting, without the unpleasantness associated with it. We were inpatient for just 2 days and it went very well. Katera (who was age 4 at the time) was in ketosis after 24 hours and did not have any problems with vomiting or low blood sugar. She also got very good control right away. Take heart, I'd say the approach they've outlined for will be a comfortable way to start. You might want to start making some small changes now.... removing sugars and refined carbs and start experimenting with some of the foods she'll be eating once on the diet. Also, you'll want to get a mealplanner program. There is one you can download free...... works very well for me, but you do have to have Excel to run that one. I think the link for finding that is www.ketogenic.org .... at least I hope that's it. I am battling the flu at the moment and am afrain I need to go hit the couch again...... someone will find the right weblink if that isn't right. > > Welcome to the list....... this is a great group. > > Patti, list moderator and mom to Katera, age 6 and a half > > > new member > > > Hello, I'm Beth the mother of (5 yrs old). has absence > seizures (approx 30 to 50 a day)and is scheduled to begin the > Ketogenic Diet on April 14th after begging her Doctor for months. > She has tried various meds (zarontin,topomax,felbatol,lamictal and > depakote) to no avail. I am thrilled to find this support group. > I'm concerned that our Doctor and the assigned dietitian > aren't " experts " re: the diet. I have read Dr. Freeman's book at > least 10 times and feel that I'm fairly prepared. However, I am > concerned with the planned initial hospital stay. Our dietian has > told me that we will be admitted on a Monday and assuming all goes > well will get to come home on Wednesday. She plans to start her on > 1/3 of a typical meal on the first night which would only be 24 hours > of fasting. From the research I have done, most programs seem to > require at least 4 to 5 days and 48 hours of fasting. Any insight > based upon your experience would be appreciated. > > Again, I am thrilled to have found this site. > > Beth > mother of > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 , No, there is not already a file set up for something like this but there is no reason why there couldn't be. Actually, I think after looking a little closer at that area of the site, it looks like this group is set up so that any member can create and upload files to the files section. You might want to go ahead and look into how that all works. I'll have to admit that I don't know much about doing that..... Nanett uploaded most of the stuff that is there and created the file folders.... but I don't think it's that difficult. I really have my hands full at the moment so if you want to play around with it, then just let everyone know that you've made a folder for that and tell them how to add their story? It sounds like a good idea. If it's anything like the other features of these Yahoo group sites, it should lead you through the process step by step. BTW, I'm still requesting a volunteer to be co-moderator....... anyone? Patti Patti/files Patti Hi Patti, I was looking over the files and just really checking things out. I was wondering if there is a place in it that we all can list certain things? Nothing long and detailed but maybe a breif description of our children. Like which kind of seizures our children have, what meds they've been on, what meds they've been weaned off of, age, illness, date of illness, and maybe if they are ready to leave the group they could state the reason why,(their child recovered completely, diet not seemingly working, such.) Make it very short, maybe one page-but I think it is important to have. If you have this already let me know how to access it. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 > BTW, I'm still requesting a volunteer to be co-moderator....... anyone? > > > Patti I might be able to help. What do you need help with? I have been off the list for awhile since Jen was doing well and my job got very stressful. Now I am on unemployment and recovered from the last few months so I have time again. I would love to get the message out about recovery on the diet and help others. Joan Jens mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Patti, Hi I will go in an try to work something into it, but I dont know if I can access it. I am not sure anyone will use it, but to me it would say, " that we've been here and done this-whether it works or not " ,some preketo parents may think that its only for Lennex Gastout Syn but then they will see its not. They will see my child who became sick with seizures after 'postencephalitis'(infection of the brain) from vaccines, I believe also karen, and many others who have children with different diagnoses. I think this is soo important. We should leave a trail for someone else to follow. Someone who is searching for answers can find them here. Thanks for your permission. Good luck on your co moderator, I would offer my help but maybe someone will step up to the plate thats been here a longer while. Lots of Love, and Dylan > , > No, there is not already a file set up for something like this but there is no reason why there couldn't be. Actually, I think after looking a little closer at that area of the site, it looks like this group is set up so that any member can create and upload files to the files section. You might want to go ahead and look into how that all works. I'll have to admit that I don't know much about doing that..... Nanett uploaded most of the stuff that is there and created the file folders.... but I don't think it's that difficult. I really have my hands full at the moment so if you want to play around with it, then just let everyone know that you've made a folder for that and tell them how to add their story? It sounds like a good idea. If it's anything like the other features of these Yahoo group sites, it should lead you through the process step by step. > > BTW, I'm still requesting a volunteer to be co-moderator....... anyone? > > > Patti > Patti/files > > > Patti > Hi Patti, I was looking over the files and just really checking > things out. I was wondering if there is a place in it that we all can > list certain things? Nothing long and detailed but maybe a breif > description of our children. Like which kind of seizures our children > have, what meds they've been on, what meds they've been weaned off > of, age, illness, date of illness, and maybe if they are ready to > leave the group they could state the reason why,(their child > recovered completely, diet not seemingly working, such.) Make it very > short, maybe one page-but I think it is important to have. If you > have this already let me know how to access it. > Thanks > > > Quote Link to comment Share on other sites More sharing options...
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